Working Your Way Through Multiple Sclerosis

The fatigue, numbness, and muscle weakness caused by multiple sclerosis (MS) can introduce new challenges to your everyday life—and that includes your work routine. It can be a struggle physically, but also, psychologically, as you figure out how much info to share with your boss and coworkers about your condition. Increasingly, though, there are resources that can help make your 9-to-5 a little more manageable when you’re dealing with MS. Easy? No, nothing about this disease is. But definitely a step in the right direction. Start with these tips and strategies.

Having the Boss Talk

More often than not, communicating with your employer about your MS and your need for accommodations is a good idea, says Jacqueline F. Rosenthal, M.D., a neurologist at Andrew C. Carlos Multiple Sclerosis Institute in Atlanta, GA. “If you notify your employer, he or she is better able to provide you with the assistance and support that you need,” says Dr. Rosenthal. “Your employer doesn’t necessarily have to know the specifics, but to know that you do have a condition that may require accommodations would be better than not saying anything and trying to work in a less ideal situation that’s going to impact your abilities in the long run.”

Not sure exactly how to go about the disclosure process? Here are some tips.

• Schedule a meeting. This is not the kind of conversation you want to bring up casually in the elevator or over email. Schedule time to talk with your boss or HR manager in person (or, if you’re working remotely, over phone or video).

• Get the conversation started. At the meeting, it may help to start off by sharing how much you love your job (or, let’s be real: like your job). If you feel like your MS diagnosis or symptoms have impacted your work, you may then say something like, “You may have noticed I’ve been a little distracted lately/had a lot of doctor’s appointments—the thing is, I just got diagnosed with MS.”

• Be prepared to educate. Your boss may have no clue what MS is—have a quick spiel ready to go that explains the basics: “MS is a disease of the central nervous system. My main symptoms are things like muscle weakness and fatigue (or fill in the blank with what you’re comfortable sharing). Thankfully, I’ve started medication that will help me manage it.”

• Be honest about your work needs. Tell your boss that you’ve done some research on simple ways to make working with MS manageable, and you want to share your game plan—that way, your boss is kept in the loop and knows you’re on top of things. For example, you might say, “My doctor says taking breaks to stretch and recharge can help with fatigue, so I’m hoping I might be able to split my hour lunch break into four 15-minute sections that I can take throughout the day. Would that be OK?”

Remember, you get to decide how much you want to share with your employer. Technically, the American Disabilities Act only requires you to state that you have a medical or neurological condition to your employer if you’re requesting an accommodation or time off because of your MS, says the National MS Society. But if you feel comfortable, being open about your diagnosis of MS and how it has impacted you may be more helpful at work in the long run.

If you’re worried about losing your job because of MS, the National MS Society has a list of helpful resources to help you understand your rights.

Managing Fatigue at Work

About 80% of people with MS experience fatigue as a result of their condition, according to the National MS Society. No doubt, that can seriously disrupt your ability to get your job done. “Fatigue typically gets worse as the day wears on, and sometimes people feel like as they’re getting more tired, they are less able to master things or think clearly,” explains Lauren Krupp, M.D., a neurologist and director of the Multiple Sclerosis Comprehensive Care Center at NYU Langone Health in New York City.

This is why energy conservation is a hot topic when you have MS. Think of your energy like a tank of gas, says Dr. Krupp: “Where it used to be a full tank, it’s now maybe a three-fourths or half-tank, so you have to use your energy thoughtfully and judiciously.” Try and observe when your energy level is at its highest, then schedule your day around it. “Often that’s in the morning,” she says. “If you have the ability to do this within your job, assign yourself the most demanding tasks earliest in the day when you’re most fresh.”

Taking breaks throughout the day is another way to make sure your tank doesn’t empty too quickly. “It doesn’t have to be taking a nap, but even 15 minutes of just stopping the work and turning away from the computer—getting away from the stress—can be very helpful for people,” says Dr. Krupp. Taking breaks is also critical for managing MS symptoms like spasms, cramping, and stiffness, she adds. Get up and stretch as often as you can, even if it’s just for a minute.

Here are some other energy conservation tips to try:

• Plan ahead for mealtime. You don’t want to waste energy in the middle of your workday making lunch—prep your meal the night or weekend before, then take out of the fridge and pop it in the microwave, Dr. Krupp says. That way you can spend the rest of your lunchbreak recharging.

• Shower at night. For some people with MS, even a morning shower can be draining. Switch to showering before bed so you’re not using up your energy reserves first thing in the a.m., suggests Dr. Krupp.

• Get a good night’s sleep. The quality and quantity of your nightly slumber will affect your energy levels the following day. “Don’t skimp—you need to be sure you’re getting enough restful sleep at night,” says Kathy Zackowski, Ph.D., an occupational therapist and senior director of patient management and care and rehabilitation research at the National MS Society. While seven to nine hours is the recommendation for most adults, if you have MS, you may need even more.

• Manage your stress. Work can be downright stressful—and that may affect your MS symptoms, says Dr. Rosenthal. “When we become stressed, it impacts how our body behaves—for example, we don’t sleep or eat the same—and that has secondary effects that can lead to more pronounced symptoms or potentially a relapse,” she explains. Get a grip through weekly activities like yoga and meditation.

• Rest your eyes. Be mindful of your peepers during your workday, especially because MS can cause vision problems. “Looking at a screen is hard on the eyes, so you want to regularly focus on something farther away for about 30 seconds to a minute to give your eyes a little break,” says Zackowski.

Enhancing Your Workspace

Your office set-up can make a big difference in how comfortable you feel working with MS. These are some key points to consider:

• Get an adjustable chair. “Make sure you have the right chair height,” says Zackowski. “You want your forearms to rest comfortably on the desk or table so your shoulders don’t have to be hiked up. This also puts less strain on your neck.” For optimal ergonomics, sit with your feet flat on the floor.

• Reposition your screen. The height of your computer or laptop screen is important, too. “You don’t want to be looking up—ideally you’re looking slightly lower, even by just a few degrees,” says Zackowski. An easy way to adjust screen height is to stack some books underneath your computer monitor.

• Consider your mouse. When you’re fatigued or struggling with arm strength, a computer mouse that uses a ball to navigate can be helpful, says Zackowski. If you have a laptop, invest in an external mouse. “With a laptop trackpad, you have to bring your arm into your body and work in a tiny space,” she explains. “An external mouse gives you the opportunity to use your arm more comfortably.”

• Program your keyboard. You may also be able to program your keyboard so it’s more or less sensitive to your touch, which can be handy depending on your MS symptoms. “If you have a tremor, you may not want your keyboard to be super sensitive,” says Zackowski. “But if you’re experiencing weakness, you may want it to more sensitive.” she says. Some keyboards also have bigger or textured keys, which can be helpful if MS causes numbness in your fingers, she adds.

• Purchase dictation software. On days when even typing can feel cumbersome, save energy with dictation software, suggests Dr. Rosenthal. (Dragon is one popular option, she says.) You can also try using your smartphone’s built in voice-to-text technology.

• Stay cool. Some people with MS are extremely sensitive to heat, and overheating can worsen symptoms like tingling or numbness, says Dr. Krupp. Even if your office has AC, consider adding a desk fan. “You can also try cooling vests and scarves,” she says.

Making It Work With MS

If you’re newly diagnosed and struggling with symptoms, you may wonder if you should quit your job. Deep breath. Take some time to see how your treatments are working—you may find you are able to get your MS symptoms under control with the proper therapies and management strategies.

“I’ve seen two extremes—someone has MS and they feel as though their work life is over, and then other people who almost ignore problems they may be having and try to keep going at 100 miles per hour,” says Dr. Rosenthal. “You really have to find that happy medium.”

Everyone’s MS experience is different—but with the right preparation, you most likely don’t have to give up your job. “You may not be able to do everything you were doing before, but most of the time you can continue to work with modifications,” says Dr. Rosenthal. “You can still have a very productive and effective work life despite an MS diagnosis.”